Thursday, January 15, 2009

The Daily Mail strikes again

The Mail loves to write about autism. Sometimes their articles are well balanced but more often they are stirring up even more hysteria over the MMR or promoting the latest 'cure'.

A friend has just led me to this. The article itself and the comments show what a wide range of views there are.

No, having an autistic child does not ruin your life. It profoundly changes it, certainly, in ways you might never have expected. You often do have to lower your expectations of what your lifestyle might be. But it is not that usual for both parents to have to give up work to look after the child. There is help out there in the form of specialist schools, many of which are residential, respite care from social services, foster care...

But these things don't just fall into your lap. Parents have to be proactive, above all they have to fight for what they need. It's hard when you are worn out, but it is worth the effort. When Son 2 was small I knew that if I could just get him into the right school our lives would be so much easier. With help I fought, I won, we have been supported. I started to work voluntarily for our local autism charity to help develop playschemes and other services, all of which we as a family have benefited from. My son hasn't ruined his grandparents lives, they live far away so rarely see him and we don't make demands of them. My husband has always worked, usually 12 hours a day, to support us and we deal with this on our own.

Of course every child on the autistic spectrum is different because they are a fascinating blend of varying degrees of autism with their underlying personality. For example my son displays quite different traits to Casdok's and is much less able than Crystal Jigsaw's daughter, yet we have all had to fight for what they need. There is no child who cannot be found care and an education, even if it means moving out of the family home. Often difficult autistic children blossom in the consistency of the 24 hour curriculum in a residential setting which understands their needs. Others do better at home. There is no right or wrong.

There are many journalists and writers out there who write about their personal experiences of parenting autism. Nick Hornby, his ex-wife Virginia Bovell, Charlotte Moore and many more. When they write they are honest, but above all their love for their children shines through, just as it does on so many blogs.

This piece, however, is written by an outsider, someone who just sees a child as a burden, as a barrier to a certain way of life. A child who, if a test had been available, should have been aborted.

(PS I haven't written yet about Simon Baron-Cohen's view that a antenatal test for autism is on the way, because I'm not really sure how I feel about it. Watch this space.)


Sue Guiney said...

Thanks for this, Cathy. It is so well-written and well-argued. Have you thought about sending it to the Daily Mail as a rebuttal to their article? xo

Cathy said...

Aw thanks Sue, though I'm not sure the Daily Mail is the right platform for my writing ;o)

The article made me frustrated because I could see why the parents were suffering so much, they were trying to normalise their activities rather than work with the autism and accept that some things are just too difficult for the child at present. I wouldn't take my son to a big supermarket even now, but he can cope with small shops for a short time. There is always home delivery!


Casdok said...

Couldnt agree with you more. The title of the article made me cringe.
C has not ruined my life but enhanched it as i hope with my batterling i am doing the same for him.
Will be interested to read your views on the antenatal test.

HelenMWalters said...

It would be nice to think that people would ignore The Daily Mail and listen to the views of people like you instead. As with so many things, it's only the people living the experience who are really qualified to comment.

Andrea said...

Hey Cathy,
I'm stunned by that article.
All children change their parents lives to a much greater extent than they are prepared for. Autistic children simply change their parents lives in a different way to other children. My lifestyle with 3 kids is very different to that of my childfree friends.
Living with autism is hard, as we all well know, we have to fight to get our children the basics other parents take as their right (childcare, schooling, appropriate medical assistance)but there is a lot worse to live with than autism.
I'm in a pretty dark place with my son right now. I'm living the teenage nightmare the article holds up as the ultimate horror. And yes, normal life as we know it has been suspended temporarily. But it's not as if I have to worry that my son is out getting drunk, doing drugs, picking fights or any of a dozen other things 'normal' teenaged boys do to get themselves in trouble.
Would I trade boy genius for a career, nice holidays and a chance to fit in with society's expectations. And miss out on seeing the world through his eyes-not on your life.

Cathy said...

Casdok and Andrea, I knew you two would understand :)

Helen, thanks and I shall be emailing you shortly about the other blog!